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The Patient's Story

Mr R was a 70-year old man, legally blind from retinitis pigmentosa, who was diagnosed as having pancreatic cancer in January 2002. He underwent a Whipple procedure at an urban, academic medical center and then received radiation therapy and chemotherapy with 5-fluoruracil and gemcitabine. Because of intermittent bowel obstructions, he subsequently had a ventilating gastrostomy tube (G-tube) placed for decompression of his abdomen. During the next 9 months, he was admitted to the hospital several times for infections at the site of his G-tube, diarrhea, vomiting, and dehydration.

He lived at home with his wife, Mrs R, who was also his partner in a marketing firm he founded. He had a daughter, Ms L, a psychologist who lived locally, and a son who was a history professor who lived far away but visited every few weeks. Both children were active caregivers during their father's illness. Despite Mrs R's own severe rheumatoid arthritis and other health issues, she was determined to care for her husband at home with the assistance of a home care nurse, Ms P, and a housekeeper to aid with daily chores.

As Mr R's health deteriorated, a close friend of Ms L's advised her about a local in-hospital palliative care unit. In November 2002, when Mr R's pain and nausea became so severe that they could not be managed at home, he was admitted to the palliative care unit. At admission, Mr R was alert and oriented but bedbound because of weakness. He and his family hoped his symptoms could be quickly controlled so that he could return home. He received intravenous hydromorphone and dexamethasone for pain and intravenous haloperidol and frequent G-tube flushings for his nausea. His symptoms initially improved and discussions ensued about his transition home. Although scheduled to go home with hospice care, his condition then declined rapidly to a point where his family did not feel they could care for him at home, even with increased assistance. They struggled to find a balance between the level of nursing care he could receive in the palliative care unit and his initial desire to be at home. After 7 days in the palliative care unit, he died with his family at his bedside.

Perspectives

MRS R:The first decision was to absolutely follow his lead and he was extraordinarily strong. He always had been the strong one of the two of us. He was intent on beating this disease, even though the numbers said only 4% survived 5 years with pancreatic cancer. He was determined and, as many of us agreed, knowing him, he might just be the one able to do it. In terms of personal response, I was as hopeful ...